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Collection of information from the community stakeholders for my capstone project is very essential to understand the reach of the program and answer my evaluation question. The stakeholders are cancer patients in the age groups of 15-29. As some of them are children, we need to obtain consent from the parents in order to collect sensitive information. Parents are more protective in giving information about minors and that needs to be addressed. Using an informed consent form, and a translator to obtain consent will help with this process. The inclusion of informed consent and program brochure in languages prominently spoken in the community in a level that is understandable to a 6th grader will address this issue (Gupta et al., 2018). As Dr. Wright has rightly pointed out, a patient has right to know the information and disclosure requirements. There will be legal implications if the health information is not shared in a language the patient can understand (Hork, et al., 2014). Stanford has appointed translators who are available 24/7 to help with parent communication.

Cultural factors present another type of challenge. In Asian and Indian cultures it is taboo to talk about mental health and cancer. If a family member is diagnosed with cancer, they may shut down and not provide any information about them to researchers, neighbors, and relatives. Sometimes, the patient themselves are not shared with the result of the diagnosis if they cannot read the results by themselves.

The researcher-participant partnership, building of trust, and opening the communication channel is important for meaningful data collection. When the participants are children or young adults, the researcher needs to build up this mutual trust with the family members in order to explain the importance of research and how the data collected will be useful for the community at large (Holden, et al., 2015). As I am also going to find out about the importance of socio-economic determinants, I will think about travel distance to the cancer center, compensation or incentives needed for participation as a compensation of their time, and transportation needs.

References

Gupta, S., Dwarakanathan, V., Kumar, A., Nongkynrih, B., & Kant, S. (2018). Challenges in the conduct of community-based research. The National Medical Journal of India, 31(6), 366. https://doi.org/10.4103/0970-258x.262911

Holden, R. J., McDougald Scott, A. M., Hoonakker, P. L., Hundt, A. S., & Carayon, P. (2015). Data collection challenges in community settings: insights from two field studies of patients with chronic disease. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 24(5), 1043–1055. https://doi.org/10.1007/s11136-014-0780-y

Hork, S., Tribby, R., Phipps, M., Saperstein, M., Johnson, J., Polanco, B., (2014). Cross-Cultural Health Care-Case Studies. Retrieved from http://support.mchtraining.net/national_ccce/case1…